Isolation Sucks: Teach Your Friends to Support You in Autoimmune Disease

Today is World Autoimmune Arthritis Day--a chance to raise awareness for how autoimmune arthritis affects the lives of millions of patients worldwide, including their friendships. Have you lost friends since getting sick with your autoimmune disease? Do you find yourself lonely as you face daily pain, fatigue, and disability? Yeah, me too...

When autoimmune disease often keeps you stuck in bed, on the couch, or unable to do much after you spend all your energy at work, it’s easy to feel like building and maintaining friendships are impossible tasks. I know my friends get sick of how often I cancel our plans. It’s been happening for seven years… And chronic illness is so taboo in our culture. Everyone lives as though people should just get well like you recover from a cold or the Flu. But with diseases like ours (Ankylosing Spondylitis, Lupus, Rheumatoid Arthritis, and Chronic Fatigue Syndrome, to name a few!), we often don’t get well. We keep struggling with daily pain and our bodies often keep degenerating in their slow, excruciating march toward death. Frankly, you and I are visual reminders to the people in our lives that they too are not in control of their health or future. The fact that we are sick makes both us and others uncomfortable! 

In the seven years I’ve dealt with autoimmune arthritis I have seen countless others decide to relegate their disease to a dark corner of their life. It’s a place only they themselves and maybe one other person can visit.

And I get it.

Let’s be honest, it is often embarrassing to be sick and let others see us this way. It’s uncomfortable for me to allow others to see me hunched over, shuffling across my school campus like a 90 year old (I’m 27); or doubled over in pain from chronic diarrhea. Or running to the bathroom every hour from persistent nausea. Or just mentally fried from being in so much damn pain. The invisible reality we carry often keeps us from engaging with others who are well. 

But what if it didn’t have to? What if we could still have friends? What if you could take your illness out of a dark corner and let a friend tenderly bear your pain with you? 

Friends, I believe friendship in the presence of chronic illness is possible and that our joy in life depends on it. You were never meant to carry this burden alone.

@@You were never meant to carry this burden alone. Friendship w chronic illness is possible.@@

I’ll be the first to tell you that letting others into my pain is scary. Letting someone see me bawling over not being able to walk across the room or how I hate what steroids have done to my body is pretty much the definition of vulnerable. Finding friends who are safe to invite into our vulnerable spaces is hard and courageous work. But it’s also been the most meaningful work of my life with the highest pay-off in peace and joy.

How can you move away from isolation and toward community when you have a chronic illness?

  1. Accept the fact that no one else can fully understand what it’s like to be uniquely you with your distinctive experience of illness. We each have our own story, and even others who are chronically ill might not totally “get” your experience. Owning that your experience and life are yours alone can free you from expecting others to understand something they simply can’t and won’t.
  2. Refute the lie that no one else can meet your needs for intimacy or friendship in your sickness. It’s so easy to think that since no one can fully understand what you experience, then others won’t be able to support you in that experience. In order to choose friendship, you have to actively discredit the lie that others won’t be able to support you like you really need. It’s often not that others can’t support us, it’s that they don’t know how!
  3. Begin (and keep!) teaching your friends how to support you in your illness. Others typically won’t know how to support you without your help. I know, it feels like others should just know how to be there for you. They don’t. They feel confused about how to be our friends. They feel helpless and frustrated not knowing how to interact with us in our sickness. 

So how do you teach your friends to support you? Some ideas:

  • Talk about your disease with your friends (or potential friends). Share with them what it is, how it affects your body, and how you are afraid it might impact your ability to be a friend and have friends. Let them know it’s ok if they ask you questions about your disease.
  • Be honest when your illness prevents you from keeping plans. Start letting friends know when you’re actually too fatigued to go out for drinks instead of just saying you can’t or that your plans changed. Let your friends know if you want to be part of their plans but fear that the get-together is going to be too difficult on your joints. Talk about how you can update the plans so you can be included. Be up-front about understanding that you won’t always be able to be included and that you’re ok with it.
  • Remind your friends that you really do want to spend time with them. When you hole up in your apartment during a flare-up: to you it feels like survival; to your friends it can feel like being ignored. Tell your friends that you value spending time with them and are sad when you can’t.
  • Tell your friends when you are super sick. It’s so simple it sounds dumb, but we get so used to being sick that we forget to tell others when things are rough. Try to tell your friends when you are extra sick or have a difficult medical treatment, test, or appointment coming up. Actually start letting them know when you have an infection or a super bad flare, so they can know what you are going through and that you might be a little AWOL that week.
  • Let your friends see you sometimes when you are really sick. Sometimes we’re just too sick to be with others, and that’s ok. But a lot of other times we just don’t let people come over because we are too embarrassed by our messy dishes, gross symptoms, and lack of energy. A real friend is going to learn how to come over to your place when you are that sick and be ok with your messy place and annoying, un-exercised dogs. But they can’t do it if you don’t first invite them in.

Most importantly, today I hope you hear that pursuing friendship while chronically ill is worth the effort. Doing the things I outlined above is going to feel scary and vulnerable. It’s going to feel uncomfortable for both you and your friends. It’s something you will get better at over time and that you will have to, like me, re-learn in seasons when sickness kicks your ass all over again in new ways. But, always, always, it will be worth your energy. I cannot promise that every person you pursue will respond to you and your illness well. But I can promise you that someone will respond well eventually, that there are people out there who will let you teach them how to support you and be there for you in more beautiful ways than you can imagine today. I can promise you that the courageous work of choosing friendship over isolation in your sickness will pay for itself in more joy than you can imagine. 

So, today, choose friendship. You’ll be happy you did. 

Want to talk more about this subject? Join me today for a live-chat at 5pm EST at the World Autoimmune Arthritis Day Headquarters online.

Are you the friend of someone who is chronically ill? Join me next week as I interview my friends on what it’s like to be a friend to someone with a chronic illness and what they’ve learned in the process.